Escondido, California Office Welcome
My name is Mary Siller and I live in a suburb of San Diego. My daughter Erin is 13 years old and in the eighth grade. She was diagnosed in July 2002 by a dermatologist we visited for the "rash" on her neck. Shock, fear, and disbelief are what followed her PXE diagnosis. Of course, much of the info the doctor gave us was outdated and incorrect. She also scared Erin by telling her she could lose her vision. The invasion of four doctors looking at her neck, asking all sorts of questions, and taking pictures was a lot to handle. During that same week, we were blessed to discover both PXE International and NAPE. I received so much support and literature from these organizations. Thank you Sharon!
I haven't spoken to any other PXE people, but have "educated" Erin's dermatologist, pediatrician, school administration, family members, and cardiologists. Each person really appreciated the educational and thorough PXE International pamphlet and researched the web site. Fortunately, the only symptom Erin has is the pebbly skin on her neck. Her eyes and heart just received a clean bill of health.
Erin knows about and reluctantly accepts this disease. She doesn't want her classmates or friends to know, and definitely doesn't want me to bring attention to her via the local newspaper. She has classmates make comments about her neck often. I respect her vulnerability and youth, and try to give her support and confidence.
I have two other children, Luke is eight in the 3rd grade and Richie is six in 1st grade. They have no symptoms, and I try not to focus on "what ifs". Personally, I have school/work experience in science, research, and technical/free-lance writing. I am familiar with the medical profession because my son had a severe brain hemorrhage and a VP shunt. Right now, I'm an at-home mom, volunteering lots of time at school and church.
I sincerely hope I can contribute to PXE, becoming a health advocate for Erin and all others affected by this disease. I hope to learn from your experiences. Thanks for your insight.